Saturday, March 22, 2014

Elianna's tongue

Like Micaelyn, Elianna also has an enlarged tongue as a result of BWS.  She has been evaluated and approved for tongue reduction surgery, but we have decided to hold off on the surgery until we are absolutely sure beyond any doubt that it is necessary.

Although Elianna's mouth is usually open she does close it occasionally.  In contrast Micaelyn almost never closed her mouth before surgery.  Overall Elianna's teeth are far more visible in contrast to the way Micaelyn's teeth were hardly visible due to the enlarged tongue covering them up.  She does seem to be developing an underbite, but at this point it's minor so we'll continue to monitor it, and she doesn't have any tooth splaying.  Her sleep isn't great, but at her age many kids still wake through the night occasionally so we don't want to assume it's her tongue causing problems in sleep (her sleep isn't horrible, just not really good).  She did have A LOT of difficulty learning to eat solid food because her enlarged tongue pushed the food out of her mouth before she could get it swallowed, but now she eats without difficulty.  Her speech is not what it should be, but she is progressing.  Unfortunately she does bite her tongue quite frequently so that is certainly a concern.  She also has a lot of trouble with upper respiratory infections, and this could be related to the fact her mouth is always open due to her enlarged tongue.

However, because the surgery is very difficult, traumatic to the child, and does have some risks we are going to just continue monitoring her until we know for sure Elianna really needs the surgery.  Most people prefer to do the surgery sooner, one reason being so the child is young enough to not remember the surgery.  Since Micaelyn didn't come home until she was 3 1/2, and then we felt it important to give her some time to adjust to the transition and form a good attachment to us, she was 4 1/2 before she had the surgery.  It was admittedly very hard for her, but I would imagine it's pretty hard at any age.  And although she was too old to forget the trauma of the surgery, the benefit to that is that she was old enough to at least somewhat understand what was being done and why.  Before the surgery we would frequently talk about how her tongue was bigger than most people's tongues and how after surgery she would have a "princess tongue."  By comparing pictures of herself from before and after the surgery she could see the difference.  So while we know the generally accepted idea is to have surgery done while the child is a baby in our experience having the surgery at an older age, while perhaps a bit more difficult, was not so horrible that we wouldn't rather wait until we are absolutely certain the benefits of surgery outweigh the risks for Elianna.
I didn't ask her to stick her tongue out for this pictures, she just does this sometimes.  Her tongue is not all the way out in the picture.

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